more twitching and tingling: Hi all Not sure where... - NRAS

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more twitching and tingling

Brychni profile image
20 Replies

Hi all

Not sure where this should be posted but...

in addition to the strong twitching (which I haven't gone to GP about) for a while now I have also had tingling in various places across my shoulder blades, side of my neck and on my scalp but the strongest is in between my eyebrows.

Even though it's been going on for a while now, it's so strong it takes me by surprise every time and I start trying to 'remove' whatever is there. It feels like an insect biting me or something stuck like a prickling hair. as I am typing this I'm aware of how nuts it sounds and I just can't bring myself to sit on front and incredulous GP and tell them yet another weird symptom.

Does anyone else have this? I so, was it benign?

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Brychni profile image
Brychni
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20 Replies
helixhelix profile image
helixhelix

not weird at all! Everything is connected. I have a narrow vertebral space in my neck and if I look down and to my left the tips of my left hand start burning.

Put them all together and talk to your GP about having inexplicable nerve twitches.

Brychni profile image
Brychni in reply tohelixhelix

thank you - feeling a bit deflated with it all at the moment.

helixhelix profile image
helixhelix in reply toBrychni

tell me about it! I feel as if all I do right now is whine. I have rheumy appointment at the end of the month and I really can’t decide which bit of me to focus on complaining about! The minute one thing gets sorted another pops up. Last appontment she sorted out trigger finger on right hand - now I have one on left hand ☹️ Plus tendons in my wrists, issues in neck, shoulders, knees and feet.

It is hugely deflating. But you’ll pop back up.

Brychni profile image
Brychni in reply tohelixhelix

Oh God, I have the tendon thing too! And something on the side of my head which got me reaching for the steroids on Christmas day. Worryingly it sorted it out and I'm just tapering on 1 tablet a day. I'm dreading it coming back. I fact it sorted out a lot of issues like my extremely painful feet and ankles which have been bad for a few months now. Every time rheumatology ask about how I respond to steroids and I say it's like magic they say "ah ha! See that proves it's Inflammatory."But I can't take them all the time or indefinitely I know.

helixhelix profile image
helixhelix in reply toBrychni

I’ve semi-controlled everything for last couxple of weeks by maxxing out on paracetomol and anti-inflammatories - and now my blood pressure has shot up. We just can’t win, but life without the deugs is just too miserable.

Garnacha profile image
Garnacha in reply tohelixhelix

Ooh both my hands have become so painful in the last 3 months, they're worse at night with terrible pins & needles & every morning my middle finger sticks & clicks, it's also starting in my little finger & the base of my thumb is so painful too, eventually got hold of the helpline who said it sounds like carpal tunnel & have referred me to a hand clinic (waiting to hear from them) but when I googled the symptoms it said trigger finger which is caused by tendons.

I also get terrible pain in both my feet especially first thing or if sat down for a while & the same in my knees.

Can I ask what the rheumatologist did for your trigger finger please? X

helixhelix profile image
helixhelix in reply toGarnacha

At my appt before Christmas she injected the lump in my palm alongside the tendons with steroids. And she said she’ll do the other hand when I go at the end of the month as didn’t want to both hands at once.

She says that (and my thumbs which are also painful) have bugger all to do with carpel tunnel syndrome. But a mix of tendonitis and plain old osteoarthritis.

Garnacha profile image
Garnacha in reply tohelixhelix

Thank you, when I googled it & looked under versus arthritis I'm sure it said that the tendon inflammation can also be part of RA or PSA 🤔 with me it's mainly the tendons that seem affected with my PSA x

helixhelix profile image
helixhelix in reply toGarnacha

That’s what makes my head hurt. People with RA (PsA) have a tendancy to tendonitis, but tendonitis is not caused by RA….

Carpel tunnel is nerve compression, not tendons!

Garnacha profile image
Garnacha in reply tohelixhelix

Oh on versus arthritis it says any form of arthritis in the wrist, especially if there's swelling of the wrist joint or tendons that run through the carpal tunnel can cause it

Screenshot from versus arthritis
helixhelix profile image
helixhelix in reply toGarnacha

doesn’t say it causes it but that it increases your risk of developing it. Not the same, just like RA hasn’t (apparently) caused my widespread tendonitis.

Rachmaninov2 profile image
Rachmaninov2

I have twitching and tingling too. The twitching is in my toes and I don’t know why it happens, it may be due to medication or problems with my spine (spinal stenosis). The tingling isn’t really tingling it’s more like a stray hair is resting on my eye lid. I had it yesterday and it may have been because I was grinding my teeth. As helixhelix says probably something to nerves. It doesn’t sound nuts and I don’t think it would sound weird to the GP.

Brychni profile image
Brychni in reply toRachmaninov2

Yes that's exactly what my in-between-the-eyebrows thing is like. Although sounds a bit more intense. It comes on really suddenly and feels like something pricking. First time I thought it was an insect or something.

Rachmaninov2 profile image
Rachmaninov2 in reply toBrychni

I also have very painful feet, ankles and legs etc.etc.

Mrspainting48 profile image
Mrspainting48

Your not nuts.....its cursity of Fibromyalgia......I have had this f o r 12 years....

My head burns with itching.

Standing under a shower helps.

It starts with hot or cold draughts.....

My body nerve twitches.....

I cant speak correctly or chew food

I salver a lot...my food falls out of my mouth......nerve pain attacks my arms which have become weak .....I cant reach my itches to scratch......total relaxation helps.....but a lot of the time its over whelming......

Its real.

Happy5 profile image
Happy5

Never feel any symptom is weird Brychni all sorts of reasons cause what your describing.

So write down what you're experiencing and speak with your GP.

Won't harm scanning the information sheets that come with your meds see if it's mentioned?

All the best 😊

Brychni profile image
Brychni in reply toHappy5

Well even more weird is phantom smells which I've also been plagued by for a few months. It started with hyper sensitive smell but now occasionally I smell stuff that really isn't there; usually at night and always something like washing up liquid and I have wondered if it's the Ajovy injections I have for migraines which have been a life saver . Perhaps I should 'report ' it. Although some of this stuff like the twitching has been going on since before I started Ajovy.

Mmrr profile image
Mmrr

As others have said it is not that unusual to have weird signs and symptoms. I regularly get twitching in my upper arms, I can watch the muscles move under my skin, then it just stops.Shooting pains down my legs is relatively common too.

There does not seem to be any rhythm nor reason to either.

Write a list and go see your GP or get a phone appointment. Best to be safe. My hands and legs used to shake badly, but looking back I think that it was co-codamol (opioid) !

Jlwgsw profile image
Jlwgsw

I have exactly the same thing especially my legs as it drives me nuts. You can actually see my muscles twitching but I to have never mentioned this because I wasn't sure it was connected to my RA

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